Who Owns Your Health Data? 99
porsche911 writes "The Wall Street Journal has an interesting article about how the data from Implanted health devices is managed and the limitations patients run into when they want to see the data. Companies like Medtronic plan to sell the data but won't provide it to the person who generated it. From the article: 'The U.S. has strict privacy laws guaranteeing people access to traditional health files. But implants and other new technologies—including smartphone apps and over-the-counter monitors—are testing the very definition of medical records.'"
If a Medical Doctor was involved in the collection (Score:5, Insightful)
it's a medical record, entitled to the appropriate legal protections and the property of the person to whom it refers.
End of discussion.
Re:If a Medical Doctor was involved in the collect (Score:5, Insightful)
Yup. Why would it be any different than the printout of an ECG or an image from an MRI? Just because it's inside the body doesn't make it something other than a medical device.
Re:If a Medical Doctor was involved in the collect (Score:4, Insightful)
I think that this is the correct thinking. The location of the data collecting device and the means of transmission make no difference. Whether or not it goes through a 'physician' makes little difference - if it's personally identifiable data, it should be protected.
If you are creating, say a smartphone app that follows your heart beat and respiration over time. Or your weight. Or your level of depression. Or whatever, the company creating the app needs to make it clear who has the data, who can get to the data and for how long. If they want to sell the data to an advertising company, fine, but it has to be upfront (in fact, you might want a cut of the pie).
People toss their private medical data all over the web. I'm always impressed about the number of patients I've seen who want me to take a picture of the large gash on their buttocks so they can put it on Facebook to amuse their friends. That's fine, it's their butt. Everybody else needs written and carefully drafted permissions. Including the implanted stuff.
It's really pretty much of a no brainer.
Re: (Score:3)
It's a classic example of how IP law works now. In this case "on a computer" is replaced with "in a body".
Re:If a Medical Doctor was involved in the collect (Score:5, Interesting)
I'm more concerned about a third-party selling my data. All medical information should only be between the doctor and the patient. Any intermediaries should have limits that prevent them from sharing the data with anyone other than the patient or the doctor (who is really acting on behalf of the patient). If there is a loophole that allows companies like Medtronic to sell patient data then congress should address this (I can't even type this with a straight face).
I'd thought these limitations are already in place and data from medical devices would be covered like data from labs and radiologists.
Outbreak Early Warning System (Score:5, Insightful)
I wouldn't want my data sold to anyone...ever...period!
However as real-time monitoring devices become more prevalent, more precise, and more capable; I can see a strong argument made for the data being captured and analyzed in aggregate by "trusted sources". The CDC could get an early warning of an outbreak, or it could be found that a disproportionally large number of people in a small town are getting cancer due to poor working conditions in a factory or pollution.
As with any data collection tool, it has as much potential to harm as it does to help...but so does a hammer.
Re: (Score:2)
Now all companies (not just healthcare) working with patient data must abide by the HIPAA rules.
Re:If a Medical Doctor was involved in the collect (Score:5, Informative)
Re:If a Medical Doctor was involved in the collect (Score:4, Insightful)
Re: (Score:2)
Re: (Score:2)
HIPAA rules apply to "health care providers" which is even more general. It includes doctors, nurses, EMTs and even medical device manufacturers under some circumstances.
Re:If a Medical Doctor was involved in the collect (Score:4, Informative)
I believe NEMSIS' ultimate goal is to benefit individual patients by providing a mechanism to share en-route EMS data to participating hospitals and the various health departments.
This may be different than the goals of the medical companies mentioned in the article that may benefit pharmaceutical companies or others.
In other words, NEMSIS seems to be enforcing a data format that enables the transfer of data between medical participants (directly benefits patient and others may benefit indirectly from the government agency monitoring), while the companies mentioned in the article are trying to market the data that they have collected (directly benefiting themselves and others may benefit indirectly from advances made in medical science from aggregated data being sold).
Re: (Score:1)
Re: (Score:2)
Re: (Score:1)
I've never seen an ambulance system which didn't have an MD as an advisor, and where is one taking the patient but to a doctor at an emergency room?
Re: (Score:1)
Re: (Score:1)
Re: (Score:1)
Again, I've never seen a nursing home which didn't have at least a consulting physician.
Re: (Score:2)
End of discussion.
You have no appreciation for what will happen when this becomes a political issue.
Re: (Score:2, Interesting)
It already is a political issue, the moment the idiots wanted politics involved in HealthCare. Don't want politics involved, then stop involving politics. This is the full problem of centralizing decision making away from the people.
Re:If a Medical Doctor was involved in the collect (Score:4, Insightful)
That is a multifaceted statement, so I'm sure it will generate some arguments covering various topics.
First of all, calling anybody an idiot for any reason especially for not agreeing with you is not conducive to a healthy discussion. I only bring this up because name calling plays a major part of the US government being dysfunctional.
There is absolutely nothing wrong with making anything a political issue. This is how a functioning democracy (more accurately republic) works. I'll go out on a limb and state that one major distinction between a republic and a dictatorship is the republic's ability to have political issues. I can only conclude that people who dislike political issues are those that wouldn't mind a dictator as long as that dictator did everything that the individuals wanted despite the fact that they might actually be in the minority of that country's population that agreed. Just reflect on that for a moment. There is no such thing as "I believe in a constitutional government as long as it only does what I believe it should" simply because there are other people involved and a lot of them pay their share of taxes too.
which brings me to this:
You have to centralize the decision process in order for political discussion to take place. You have two senators and a several house representatives that bring your local issues to this forum. Every time I see someone say we need to take our freely elected government back, I always ask "from who?".
Anyway back to the real topic -- government has to be involved to protect our rights as patients. Who else should it be?
Re: (Score:2)
by Idiot, I mean people who want politics involved in heath care decisions, then complain and whine about healthcare being politicized. They are idiots because they want their cake and eat it too. If you want politics involved, you have no right to complain when politics are involved. I don't understand why this isn't clear. Either have politics involved, or don't. But don't complain when you can't have it both ways, they are mutually exclusive. This is a binary choice. I know that plenty of people think th
Re: (Score:2)
Every time I see someone say we need to take our freely elected government back, I always ask "from who?".
http://www.opensecrets.org/politicians/ [opensecrets.org]
Re:If a Medical Doctor was involved in the collect (Score:4, Informative)
It already is a political issue, the moment the idiots wanted politics involved in HealthCare.
If they're idiots, why is it that health care with lots of government involvement has better patient outcomes for lower costs?
This is the full problem of centralizing decision making away from the people.
The problem with patients making all the key decisions is that patients as a rule (a) don't have a clue what they're deciding, (b) have no idea what it costs, (c) would as a rule pay any price to not die, and (d) don't always have cash on hand when they would need to pay the price to not die. Those are the basic reasons why free markets don't produce optimal outcomes for health care.
Re: (Score:2)
I hope you're making a mistake in saying that patients don't make all the key decisions about health care, at least when it comes to their own care. See, most hospitals I've ever gone to have this big thing about consent. You must consent to care before it will be given. Sometimes that consent is pretty broadly written, but consent can be dialed back to only those things you actually consent to. To the point about whether they know what they're deciding or not, that doesn't matter from this standpoint becau
Re: (Score:2)
"If they're idiots, why is it that health care with lots of government involvement has better patient outcomes for lower costs?"
Complete and utter lack of free market would have better care and results at lower costs. Lasik eye surgery is one such micro economic example. The cost is not borne by Insurance and you can have excellent care, at a definitively affordable price in just about any city in the USA. The US health care system is rife with inefficiencies of Insurance and regulation that places like Can
Re: (Score:2)
Re: (Score:2)
Re: (Score:2)
it's a medical record, entitled to the appropriate legal protections and the property of the person to whom it refers.
End of discussion.
Not so. When I emigrated from the UK, I asked my doctor for a copy of my records for myself, so that I could pass them onto my new doctor in NZ. Sorry, I can't do that, he replied.
He might have been yanking my chain, but he offered to give me a summary of my medical history for the new guy - which was more work.
Re: (Score:2)
It could also be Google.
If the doctor used Google Drive he may have given up those rights you referered to, only so that Google should be able to store that data at various servers around the world at their own accord.
If it is a US citizen it may perhaps be less complex, as they technically all you are belong to us Nigeria; I have eleven e-mails from a billionaire to prove that.
Hello HIPAA! (Score:3)
Re: (Score:3, Insightful)
Re: (Score:2)
There is a large research market for de-identified data, regardless of its source. I suspect that is what is being sold. Even that is fairly well-regulated out of fear of HIPAA if nothing else.
Yet it's still a federal offense to file serial numbers off guns, even though there is a large market for de-identified guns.
Re: (Score:1)
Re: (Score:2)
In this case, I would think you'd want the personalized information removed, unlike on a weapon, since the idea is to provide privacy, rather than to provide responsibility for its use. Just saying.
Re: (Score:2)
The use isn't the point, anyway - the point was, why is it (legally) OK for third parties to sell my information by "stripping it of identifiable data," but I can't do it myself? In other words, if you or I were to "strip personally identifiable information" from a gun, then try and sell it, we'd be looking at hard time in federal pound-me-in-the-ass prison, but whe
Re: (Score:2)
Well... guns can kill people and although I'm generally in favor of the right to bear arms, they do need some control. The fact that registered weapons can fall into the hands of others or have the serial numbers filed off is beside the point. Your data is only going to actually affect you if you can be identified by it, which means you want the opposite of registration.
As for your own data, I understand that you see people making money off you, but they really aren't making money off of you as they are f
Re: (Score:2)
Well... guns can kill people
No, they don't.
looks at his gun Gun: Go kill someone!
... gun does not respond
see?
FYI, improperly designed medical implants really can kill people without outside intervention, unlike a gun.
As for your own data, I understand that you see people making money off you, but they really aren't making money off of you as they are from operating equipment that can make those observations.
Observations provided by me, my body, through a device I had to pay to have implanted.
What part of that sounds like I shouldn't be compensated? Hell, at least Google has enough conscience to give me a friggin' email account in exchange for mining my data, and they aren't even sticking their products in my chest.
I suppose that you could sell it, but I really don't see the harm in them using aggregate data that you are a part of, as long as you are in no way associated with it.
T
Re: (Score:1)
"Granted, for expensive procedures, there is no way around third payer. It is what it is."
Yes if there way only a way to pay for expensive things like cars and houses without having to save for it.
Re: (Score:1)
The way to pay for expensive things like cars and houses without having to save for it is a loan. This procedure requires going to a bank and applying. If you qualify, you put up collateral (usually the car or house you're buying), and in exchange get the money.
The problem with healthcare is that there's no inherent collateral. It's not like they're going to repossess your new kidney when you can't pay for it. It's also unlikely that a typical person would qualify for a loan for a kidney transplant even if
Say what? (Score:4, Insightful)
The U.S. has strict privacy laws
Is that the same U.S. as in all the other posts? Since when has the U.S. any effective privacy laws?
Easy answer (Score:5, Funny)
According to Betteridge's law of headlines, the answer to "Who Owns Your Health Data?" is "no".
Re: (Score:2)
I interpreted it as: "not you". Or perhaps a more verbose: "If you have to ask, you cannot afford it."
Re: (Score:1)
Market Opportunity (Score:3)
"When other health device companies sell data they won't let you see, why spend your money with a company you can't trust? With MedicalCompany, your data is your own."
Re: (Score:2)
The investors/shareholders in MedicalCompany have taken issue with your failure to monetize data and are now going to sue.
Says Morbo:
Investments do not work that way! GOODNIGHT!
Re: (Score:2)
"When other health device companies sell data they won't let you see, why spend your money with a company you can't trust? With MedicalCompany, your data is your own."
But in order to be profitable you would have to charge more for your services that Medtronic. At that point you become "out of network" for the insurance providers and the government programs that care only about the least expensive service. Your health insurance company does not care what the service provider does with your data. In fact, they are probably one of the customers buying your medical data so they know if they want to continue covering you next year. Don't like it? Choose to self-insure.
What rights? (Score:5, Informative)
HIPPA only applies to health care providers. Anyone else who gets your data by any means, is not restricted by HIPPA. Notable examples are life insurance companies. You sign a waiver to give them access to your health info to qualify for a policy. After that they can do whatever they want with the data. They can, and do, routinely pass it along to a medical information clearing house in Massachusetts (I forget the name of it), which is a third party. The clearing house dishes out the information (including personal identifying information) to anyone who wants to pay for it.
Americans imagine that they own their personal data. Data (information, facts) are not property and can not be owned. Intellectual property laws bestow some rights but not "ownership" You can own the rights but not the facts. If you could own facts, then you could prevent police and courts from using facts about your behavior against you.
Records, on the other hand are ordinary property. Whoever owns the records can treat them like any other property, regardless of the information they contain (exceptions for national security, for parties covered by HIPPA, records under subpoena and so on). There was once a notable case of a hospital in Las Vegas. They rented a warehouse to store paper patient records. They failed to pay the rent. The landlord sold all property stored in the warehouse to recover money owed to him. Neither the landlord, nor any subsequent owner of those paper records was restricted in any way as to what they could do with them.
Re: (Score:2)
"Data (information, facts) are not property and can not be owned"
I think just about every single government organization and corporation throughout history is laughing at that comment.
Re: (Score:2)
You're wrong on every single level. HIPPA applies to all records regardless of source. Just ask any HR department of any company anywhere in the US. I'm routinely dealing with HIPPA requirements in my IT department and we do nothing with the medical industry. Sorry but tossing out this type of nonsense is irresponsible.
Re:What rights? (Score:4, Informative)
Actually, no, he's mostly right, to my surprise. From http://www.hhs.gov/ocr/privacy/hipaa/understanding/coveredentities/index.html [hhs.gov]:
"The Privacy and Security Rules apply only to covered entities. Individuals, organizations, and agencies that meet the definition of a covered entity under HIPAA must comply with the Rules' requirements to protect the privacy and security of health information and must provide individuals with certain rights with respect to their health information. If an entity is not a covered entity, it does not have to comply with the Privacy Rule or the Security Rule."
The one thing he got wrong is that while the life insurance company's use of health information is not covered by HIPAA, the medical information clearinghouse *is*, as such clearinghouses are "covered entities" (along with health care providers and health plans--while your life insurance isn't covered by HIPAA, your health insurance is).
Re: (Score:2)
You're wrong on every single level. HIPPA applies to all records regardless of source. Just ask any HR department of any company anywhere in the US. I'm routinely dealing with HIPPA requirements in my IT department and we do nothing with the medical industry. Sorry but tossing out this type of nonsense is irresponsible.
Ironically, that's precisely the type of nonsense Medtronic is using to justify their own actions.
Re: (Score:2)
They can, and do, routinely pass it along to a medical information clearing house in Massachusetts (I forget the name of it), which is a third party.
MIB Group, Inc. [wikipedia.org], claiming the title for creepiest business name in the health industry.
It's HIPAA (Score:1)
Not "HIPPA"... just so you know.
* What is it they say around here, acronym-wise? Oh, yea - "FTFY"...
APK
P.S.=> I used to work for a fairly large insurer doing data processing oriented programming for conforming to the regulations it imposed...
... apk
Re: (Score:3)
So we can't eliminate being tracked on the web.
We can't eliminate tracking from smart meters
We can't eliminate tracking from water meters
We can't eliminate tracking from doctors.
We can't eliminate tracking from drones.
Just who the fuck is left upholding their oath?
This isn't America, it's a fucking corporation.
I gotta ask the obvious question here... Did you JUST figure THAT out???? A LOT of us have known this for a few years now... I often wish I could forget how America is now owned, lock-stock-and-barrel by corporations...
Understand? (Score:3, Insightful)
"Medtronic plan to sell the data but won't provide it to the person who generated it."
Why wouldn't they give you the data you generated? Why is this allowed? Why is patenting human genes going through a supreme court decision? Who in their right minds thinks that will ever turn out well?
Re: (Score:2)
The problem is right in how you're asking the question: "why wouldn't they give you the data you generated". That word, "give", it implies something you get for free. Why would you expect companies would do that? Nothing in it for them. The only way to get access to the data is to pay for it, with a trip to your doctor's office for example.
Re:Understand? (Score:4, Interesting)
I didn't say I was OK with anything. I stated the reality of the corporate position here. There are two main ways to get something out of a corporation. You can pay them for it, or you can legislate a rule so that they're required to provide it--which will then be passed along as a cost of doing business. Since neither of those are involved when a person requests their own medical data, of course the company says they can't have it right now. You are not a paying customer to them, so they have no incentive to make you happy.
The way health insurance in the US works, people are covered only if medical work goes through their doctor, and there is no incentive for the patient to improve their own care. In fact several of the corporate entities here are actually motivated against you getting better through self-care, the pharmaceutical companies being the most obvious one. Until you understand how the system is constructed and works already, you're not going to bust down any of the many barriers set to block empowered patients from doing anything on their own.
P.S. not all of those barriers are even a bad idea. Left on their own, many people prefer slickly sold snake-oil to real medicine. If I were at the company providing this heart product, I could easily construct a scary story about how people who can see their own data will skip regular check-ups because they think they know everything. And in some cases, that's exactly what will happen here.
Who Owns Your Health Data? (Score:2)
Re:Who Owns Your Health Data? (Score:4, Interesting)
Health Data is owned by the Patient (Score:3)
Recently, I visited my doctor. He needed information from my former doctors and hospitals. I asked him, if it would not be easier when he would ask and I would provide the addresses. As I thought the data was owned by those doctors and hospitals. He informed me, that this would be complicated and he would require a permission signed by me for every data record. However, I could get everything just be call or mail, as I am the owner of my data. This is at least valid for Germany. The data is cannot be passed to the health insurance nor to any other organization. Especially not without my permission. Furthermore, other institutions are not allowed to ask for such information. The only exception so far are private/commercial health insurance companies. Thanks god we have that community/state driven system.
Re: (Score:3, Informative)
Let the free market sort it out (Score:2, Funny)
I'm sure that this will all end well for consumers if you just let the capitalist system work. We don't need any business-crippling regulation about ownership and rights. I'm sure if the company who sells implantable devices that keep people from dying stops having people buy their product, they'll loosen up their terms. When it's your life or your data, just tell them you'd rather die. After a few years, if everybody died instead of giving in, the company would have to change their policies or go out of bu
What the hell is this doing phoning home? (Score:2)
These devices shouldn't be shipping anything sensitive into the "the cloud" in the first place. They should be delivering the data to local readers operated by patients and/or doctors... who may or may not then choose to give some information to the device builders and/or to others.
That's where regulation should be aiming: total local patient control from the get-go.
Re: (Score:3)
What, exactly, do you think "the cloud" is? Hint: what you describe is the essence of the cloud.
How do the data get from the device to the cloud? Why, via a local reader. Essentially the same hardware could give the patient the data without involving the manufacturer, which would be a much more secure and robust design as well as keeping control where it belongs. Whether or not you involve the doctor is a separate decision... but it's a lot easier not to invo
Sadly, I don't think it is me... (Score:2)
I've long since had a problem with a doctor or doctor's office claiming they own my health data. I pay them for a service, and thus what they tell me should be between my provider and myself. Once I'm finished with my appointment. I should be leaving the office with a copy of the diagnosis and treatment suggested. If I make an agreement with my doctor to receive medical payment from my insurance company, then my doctor may send a copy of that visit information to my insurance company. And if I feel it i
Medical Record here (Score:2)
I have a cold with congestion and my tummy hurts.
There /., you now have my medical record. I hereby require you to keep this post retrievable by me for at least the next 7 years.
I pay for it, I own it. Don't I? (Score:1)
This kind of intellectual gymnastics is a perfect example of taking something simple and making it complicated.
I pay for my insurance, I am the customer and the insurance is my agent. I own whatever I pay for.
Except when its not profitable for the company that did not design the data collection properly to be easily produced upon request.
I don't care if its machine code.... if my body generated during my treatment, again which I paid for I should have no problem at all getting my data.
How stupid is this?
Abo
The question is nonsensical. (Score:2)
No one owns data. What you mean to ask is "Who should have access to your health data?"
All I know is I sure don't. (Score:2)
However I am also pretty sure that with the state of health "care" in Canada, nobody knows where your health data is anyways. They couldn't even send my health card renewal notice to the correct address. Psst, its the same address I have been paying excessive taxes from for the last 10 years.